Rinvoq causing very high lipid numbers

Has this happened to any of you on rinvoq? They have been going up ever since I started rinvoq in April and my nurse said they would most likely go down once the acute phase reaction was over. Well, I got my current numbers and they climbed another hundred or more points again this month. Total cholesterol is now 431 and LDL is 326. Should I ask my doctor about dropping from 30 mg to 15 mg? I am getting scared seeing them rise so much every bloodwork but my UC is in remission.

Thanks Serenity. That is always the hard part of our medications. It was my GI who ordered the bloodwork again based on the numbers being high last time. The rinvoq website says adding a statin is recommended for this scenario but I would rather try the 15 mg since that is the recommended dose for UC patients. 30 mg is recommended for severe, refractory UC which I have so I get why I am on this dose. My parents are on statins but they aren’t healthy at all so Idk if it has even helped them. They both have metabolic syndrome. My mom actually said that it runs in the family and to try the statin since she has been on it for years. I’d rather not add another medicine though.

I’ve been on statins for years — it was a shock to me because at the time I did not have UC and had always eaten fairly healthy and low fat foods. I tried to lower it by eating even more healthy, exercising, and oatmeal everyday but it didn’t have an effect. My mom was on statins so yeah, definitely a hereditary thing. My husband who is overweight and likes fatty food and didn’t exercise much at the time has way lower cholesterol than i do. 😡

Oh guys. I had such a depressing appt with my PCP. I had a physical scheduled for today anyway and we went over my labs. She recommends stopping Rinvoq immediately because the increase in cholesterol has been so fast and so high. She is not confident that cutting the dose down will help since my numbers have only increased since going from 45 to 30. I scheduled an emergency appt tomorrow with GI to discuss my options but not sure if they will agree with the PCP. She wants to start me on Repatha injections in the mean time to get the numbers down and reduce my risk of heart attack. I just feel like I got punched in the gut and am so upset about it. Anyone take Repatha?? I was not expecting to add another shot after stopping Simponi this year. My PCP said regardless of what GI decides, I need to try the medicine right now. She said diet wont do anything with how much Rinvoq has increased these. She said if I was a random patient coming in with these numbers that she would refer them to a cardiac specialist immediately. I’m like great….

The worst part is that we just scheduled a week vacation to the beach and paid in full already (of course nonrefundable). Just our luck.

Does anyone know if xeljanz would be the same or worse regarding this?? Is this change even an option?

Poopydoop, have your numbers actually been really high? Normal total cholesterol is 200 or below. LDL I am not sure honestly. My triglycerides went up to 187 and normal is under 150.

Ps just did a bit of reading. Triglycerides spike after a meal. So results can be influenced by what time you last ate relative to the time you had the blood test. It might be worth asking for a repeat test...

Aah I never did mine fasting.... Good luck with your GI! Hope they let you stay on rinvoq.

Keith, how come you are on stelara now? Is it for the pouchitis? You have been through a hard time as well to say the least. My GI doctor has crohn’s and has been on stelara for a long time. Many years at this point and is doing well, too. I think the numbers will go down if I stop it but really want to milk this drug as much as I can. Id honestly rather be in remission and feel fine and just have these high numbers. They cause me zero discomfort and I was not aware of how high they were until the bloodwork was done.

Personally I would try statins first rather than risk a loss of such a hard-won remission.

My appt with Gi nurse practitioner went well. She does not agree with the PCP at all due to the success and healing I have had on rinvoq. She said this has been happening to several patients and one of hers even got over 1000. She told me she would worry if my numbers were double what they are but as of now, she is fine keeping me on it. She does not think adding Repatha is necessary at this time. She said the lady over 1000 is still on rinvoq but they added lipitor. She has a meeting with the rinvoq medical team this Friday to discuss what to do for patients like us while keeping us on the medication. She is considering dropping my dose down to 15 or having me alternate days of 30 and 15 to see if that helps another issue I am dealing with (3 month vaginal yeast infection that has now spread to my scalp-so awesome haha). She did say this level of immune suppression isn't letting me beat this issue which is very evident since I have never had to deal with this for that long. But that is all! I did say I would like to wait til after vacation to make any changes so I am staying at 30 til mid September as of now.

Bacon Girl,

Glad you got a second opinion. I hope your numbers stabilize in the near future.

There are times when our numbers spike and then return to normal. Have you had another test?

This is yet another reminder to us all that we need to confirm medical opinions with our GIs.

Clo

Bacon Girl said...


Keith, that is a long time and I hope it keeps working for you. It sucks that you got your colon out and still have to deal with this crap. Just not fair at all with the level of damage UC causes us forever.

I am totally fine with it. I figured that i'd end up with colon cancer anyways... both of my grandfathers had it and I have an IBD so the likelihood was very high.

Living with pouchitis is much easier for ME than with UC.

Hi Bacongirl. Sorry to hear of your troubles. I thought I would add my input as I have had a similar experience.

Ive been on Rinvoq since 2017. For most of that time I was on 30mg and my Lipid levels, which have always been perfectly fine, went high. Though not as high as yours. I had my Rinvoq dosage reduced from 30mg to 15mg about 12 months ago - though not due to high lipids. It was because my immune system could not clear HPV from my body as I went on to develop AIN 3 with severe dysplasia. Though thankfully no cancer. I am currently having laser surgeries to remove the pre-cancerous lesions.

Anyway. my lipid levels have remained the same ever since my Rinvoq dose was halved. This was disappointing as I was so sure they would come down. They did not. So, for me anyway, any dose of Rinvoq raises lipids, 15 or 30.

I also found I am having pins and needles in my feet (mostly at night and it disrupts my sleep) which I believe is also related to the Rinvoq. So, I did a lot of research and found 2 supplements that have hugely helped to relieve the pins and needs (I believe its technical term is peripheral neuropathy). And these same supplements have also started to lower my lipid levels, as apparently they are shown to help with that too.
So, perhaps you can try them? They are R-Alpha Lipoic Acid (must be the R version and not the cheaper S version) and also Acetyl-L-carnitine.
I have been taking them a few months and my Triglycerides Serum levels are down from 4.81 to 3.29 although total cholesterol serum levels remain the same. But, its still good progress.

It is worth a try. Also, my GI looked at my lipid levels and said they did a calculation - Height, weight, BMI, have I ever smoked, etc. and the risk score of needing Statins was only 4% - and so they said I dont need to worry about the high lipids. But, I am a natural worrier!

I have been in an amazing remission since 2018 on Rinvoq and I really dont want to come off it but I have been told this week I may have to because of the dysplasia, and be moved to Stelara. I will have to see what the surgeons say after my next surgery scheduled for 8 September and whether the lesions have healed or not. I am also taking Beta-Glucans Immune Support supplements in this regard, and I believe they are helping my immune system clear the HPV. Without them, and on Rinvoq, no chance.

I hope this has helped.

I can believe it. I once noticed corn passing days after I ate it. Wonder where it was all that time.

A 48 hour fast... oh that sounds fun.